Autism Research Studies

Below is a list of Autism Research Studies the Autism Society of Iowa has been contacted about.  The Autism Society of Iowa does not endorse any student, study or college listed, but would like to make families aware of studies available, that they can participate in.

 

Arizona State University – Autism Treatment Effectiveness Survey

You are invited to evaluate the effectiveness of treatments for autism, including medications, nutritional supplements, diets, therapies, and education. Our goal is to learn which treatments are most effective for different symptoms (language, anxiety, sleep, GI, etc.). Survey results will be posted on our website for families and clinicians, and published in a scientific journal. Your participation is voluntary. The survey will take 15-45 minutes, depending on the number of treatments you wish to rate. For more information, go to http://autism.asu.edu

 

Auburn University- Therapeutic Relationship between Primary Caregivers of School-Aged Children with Autism Spectrum Disorder and Speech-Language Pathologists: An Electronic Survery

You are invited to participate in a research study to determine factors that contribute to the therapeutic relationship between primary caregivers of school-aged children with Autism Spectrum Disorder (ASD), in Kindergarten through 5th grade, and their child’s speech-language pathologist (SLP). This study is being conducted by Rachel L. Nokes, Master’s student in Communication Disorders at Auburn University, and Dr. Allison M. Plumb, Associate professor in the Auburn University Department of Communication Disorders. You were selected as a possible participant because of your membership in the Autism Society for the state in which you reside.

What will be involved if you participate? If you decide to participate in this research study, you will be asked to complete an online survey form that includes 59 questions. Your total time commitment will be approximately 20 minutes.

Are there any risks or discomforts associated with participation? There is always a risk of breach of confidentiality with surveys, but this possibility is being addressed by keeping all responses completely anonymous with no identifying information whatsoever being collected and using all reasonable and customary security measures. The data will be stored behind a secure firewall, and all security updates are applied in a timely fashion.

Are there any benefits to yourself or others? There is no direct benefit to you for participating in this study, but it is hoped that the results of this study will help to provide needed information on how the parent-clinician relationship is viewed and valued by parents, factors that guide a positive relationship, factors that negatively impact this relationship, and what needs/expectations these parents have. This study’s purpose seeks to provide professionals in speech-language pathology and related fields with valuable information and recommendations to incorporate into family-centered intervention for children with ASD.

Will you receive compensation for participating? You will receive no compensation for completing this survey; however, your participation would be greatly appreciated.

Are there any costs associated with participation? There are no costs associated with this survey, except for the few minutes of your time that it takes to complete the survey.

If you change your mind about participating, you can withdraw at any time by closing your browser window. Once you have submitted anonymous data, it cannot be withdrawn due to it being unidentifiable. Your decision about whether or not to participate or to stop participating will not jeopardize your future relations with Auburn University or the Department of Communication Disorders.

Any data obtained in connection with this study will remain anonymous. We will protect your privacy and the data you provide by NOT asking for any identifiable information. Information collected through your participation may be presented at state or national conferences and may be published in a professional journal.

If you have questions about this study, please contact Dr. Allison Plumb at amp0016@auburn.edu.

To begin the survey, click here.

 

California State University- Quality of life, Social support, Caregiver Burden, and Stigma of Caregivers for Children and Teens with ASD

Graduate students at California State University in the Master of Occupational Therapy Dept. and are conducting a quantitative research project titled, “The Relationship Among Quality of Life, Informal Social Support, Affiliate Stigma, and Caregiver Burden of Minority Caregivers of Children with ASD.” 
Current research has greatly neglected the experience of minority parents of children with ASD. This study has IRB approval. For a flyer and more information, click here.

 

Iowa State University- Childhood and Wellbeing Puberty Study

Do you have BOY with a developmental or a mental health disability? Is he between the ages of 10 to 15 years old? Would you be willing to participate in an online survey on your experience and his experience going through puberty?

Click on this link for more information and to fill out the online survey: https://iastate.qualtrics.com/jfe/form/SV_9Y07JRhJ8spVR89

If you have any questions about this study, please directly contact jmphan@iastate.edu. Thank you!

 

Louisiana State University – ASD Caregiver Survey- Barriers and Treatments
I am a doctoral student at Louisiana State University. My colleagues and I are studying factors that affect caregivers’ experiences accessing diagnostic and treatment services for children with Autism Spectrum Disorder (ASD). We feel this is a particularly salient issue at present given recent changes in many major insurance policies as well as state and national initiatives surrounding ASD service provision.

Accordingly, we’ve developed an online survey for caregivers of children with ASD in order to better understand the process of accessing services, including factors affecting decision making in what services to pursue (evidence based vs. non-evidence based), and barriers experienced along the way. We hope you will consider sharing the information with primary caregivers who may be interested in helping us better understand how to improve the process of accessing effective services for ASD.

Here is the link for the anonymous survey, which has been approved by Louisiana State University’s Institutional Review Board. http://lsu.qualtrics.com/jfe/form/SV_3HKbJrmrneXVBCR

Lindsey Willis Williams, MS, CRC
Louisiana State University
Doctoral Student, Clinical Psychology
6000 University Ave # 450, West Des Moines, IA 50266
Phone:(515) 241-2000

 

Northwestern University- Autism Research Project

We are conducting general interviews to learn more about the Autism Spectrum Disorder (ASD) community.
Would you be available for a 15 minute discussion either via in-person, video chat, or phone call to assist our project?
Additionally, we are performing mobile application user testing, would you be interested in participating in that too?
Please let us know what time works for you, if interested. This will begin in August, 2018.

Below is the google doodle we are using to collect information for the interviews: https://goo.gl/forms/CGKD4VbEd40GoQIt1

You can reach Brent Chase at gaiawearables@gmail.com or by phone at +1(410)440-2478.

 

Northwestern University- Family Genetic Study of Language in Autism

This research study explores how key developmental, behavioral, and neural features may relate to skills in autism and be heritable in families. Our goal is to inform the causes of autism, and to understand how the genes involved in autism may play a role in language and other important skills.

STUDY OBJECTIVE: To understand the brain and gene basis of language and related skills in individuals
with autism and their family members
IMPORTANCE OF STUDY: Involves the use of exciting and innovative technologies for studying language and social features; Helps us further understand genes related to features of autism
WE ARE LOOKING FOR: Individuals with autism, their parents, and grandparents of any age; Individuals without autism
PARTICIPATION INCLUDES: Solving puzzles; Completing measures of brain activity; Talking about your friendships and the ways that you relate to other people; Providing a blood sample
COMPENSATION AND TIME: Participation involves either 1 or 2 visits; Participants will be compensated for their time

Researchers at the Neurodevelopmental Disabilities Lab at Northwestern University are conducting a research study funded by the NIH to explore how developmental, behavioral and neural features may relate to skills in autism and be heritable in families. In particular, the research team is looking for individuals who grew up in Iowa and think they may be related to someone with autism to participate in their study, such as parents and grandparents. This is because they study how performance on the Iowa Test of Basic Skills (ITBS) may relate to autism symptoms in the next generation. Through this work, they are learning more about how genes associated with autism are inherited through generations and may relate to different language and cognitive skills.

If you or someone you know may be interested in participating, please contact the team at 877-275-7187 or familystudy@northwesternedu. You can also visit their website http://ndl.northwestern.edu to learn more about their work!

 

Ohio State University- Coronavirus and Autism Behavior Study (CABS)

Seeking: Parents of a child with a diagnosis of autism spectrum disorder (ASD) between the ages of 3- and 10-years-old

Individuals with autism spectrum disorder (ASD) may be potentially vulnerable to the effects of the coronavirus (COVID-19) pandemic. We are conducting a national study on the impact of the coronavirus on children with autism spectrum disorder and their families, with a particular interest in demographics and diversity. Broadly, we want to track the development of children with autism throughout the quarantine period of the pandemic, and learn about the emotional wellbeing and structure of the family during this time. Results from this study are hoped to help clinicians and practitioners improve treatments and services over time, supporting educational, behavioral, and social health in both children with autism and their families. Having a greater understanding of the development of children with autism following a pandemic should benefit care and enhance success in meeting the needs of these patients and their surrounding community.

For more information, click here for a flyer and parent letter.

If interested, please contact us by email (CABS-Research@osu.edu) or phone (614-247-4997).

Websitehttps://u.osu.edu/cabs/

Facebookhttps://www.facebook.com/CoronavirusAutismBehavioralStudy/

 

Ohio State University- Neurdiversity & Participation in the Decision-Making Process

We are reaching out to you for help in disseminating the survey among adults with autism/autistic people 18 years and older. The survey asks adults 18 and older with autism about their experience participating in public events and decision-making processes.

The IRB authorized the research, the Study Number is 2019B0545.

This is the link to the survey:
https://osu.az1.qualtrics.com/jfe/form/SV_e2v2GEJz5SoLPcF

The research goal is to measure the characteristics of inclusive participation in the decision-making process. We are asking about past experiences and expectations for the future.
This survey far-reaching goal is to help adults with autism to advocate for their needs for inclusive decision-making processes.

Incentives: 
There will be a chance to win in a lottery to get a gift card in participation in the online survey. Opportunities to participate in drawings will be provided to all eligible participants. They will be entered into a drawing for one of “1 of 6” $50 gift cards for Target. A total of 6 cards will be distributed.
By law, payments to participants are considered taxable income.

 

SkillFlix for Parents- Autism Spectrum

Funded by the National Institutes of Health (NIH), the SkillFlix for Parents—Autism Spectrum study is enrolling participants now. This study is for parents or guardians of 13-18 year old youth on the autism spectrum who engage in interactive conversations. The study will test the usefulness of an online training tool with videos for parents that model parent/child interactions on healthy relationships and sex (discussions about healthy boundaries, refusal skills, pregnancy prevention, STI prevention, seeking help etc.).
Participation will entail parents participants:
      • engage in an audio recorded conversation with their child on a pre-determined topic related to healthy relationships and sex;
      • watch the parent/child interaction videos;
      • engage in a second audio recorded conversation.
As a thank you for participating, parents and youth will receive $200 and $50 e-gift cards respectively.

 

University of Iowa Children’s Hospital Autism Center – Behavioral Treatment Using Telehealth for Children with Autism – Division of Pediatric Psychology, Center for Disabilities and Development, and Department of Psychiatry

A Treatment Research Opportunity  We are currently accepting referrals for participants in a research study on Behavioral Treatment Using Telehealth for Children with Autism. This study is funded by the National Institute of Mental Health. Scott Lindgren and David Wacker, faculty members in the Stead Family Department of Pediatrics at the University of Iowa, are the principal investigators for this study. Todd Kopelman, Kelly Pelzel, Matt O’Brien, Wendy Berg, and Linda Cooper-Brown are co-investigators at the University of Iowa. Nathan Call is the lead investigator at the Marcus Autism Center at the Children’s Hospital of Atlanta, and Dorothea Lerman is the lead investigator at the Center for Autism and Developmental Disabilities at the University of Houston – Clear Lake. Children in Iowa, Georgia, and Texas will participate in the study.

Purpose of the Research  The primary purpose of this research study is to evaluate the effectiveness of functional analysis and functional communication training, which are applied behavior analysis (ABA) procedures, in decreasing problem behaviors displayed by young children (ages 18 months to 6 years) with an autism spectrum disorder (ASD). All behavioral assessment and treatment procedures will be conducted through telehealth coaching for the parents using internet links to the family’s home. The study will compare whether different approaches to scoring and analyzing behavior observation data produces the same positive outcomes. One approach to treatment will include a more streamlined behavior assessment procedure and less extensive data scoring and coding of the behavior that is observed in weekly telehealth sessions. Half of the children will be assigned randomly to each of the two treatment groups. All children will receive active treatment; there is no control group that receives only a “placebo” treatment.

Study Procedures  We plan to include 50 children at each site over the course of this 4-year project. All children who participate in this research study will be displaying problem behaviors (e.g., tantrums, non-compliance, aggression, self-injurious behaviors) at the time of their inclusion. Each child from Iowa will be evaluated by research staff at the UI Children’s Hospital in Iowa City to confirm that they meet the diagnostic criteria for an ASD. As part of this evaluation, parents will be interviewed about their child and asked to complete checklists about their child’s behavior and about their own levels of stress and mood. Following confirmation of an ASD diagnosis, a behavioral evaluation (functional analysis) will be conducted in the child’s home. Parents will receive coaching on procedures via a video conference from a behavioral consultant located at the UI Children’s Hospital. A computer for teleconferencing and a connection to internet service will be provided for those families that do not already have these services available. Following the behavioral evaluation, we will then train parents to conduct a treatment called functional communication training (FCT), which has been reported in the scientific literature to be effective for many children. The behavioral evaluation and treatment will typically last for up to 6 months for each child. We will also check back with each family 6 months after treatment has been completed to see how the child and parents are doing and to complete a video observation probe. Families will be reimbursed for the cost of travel to attend the initial evaluation in Iowa City at the start of the study. There will be no costs to families in the study other than their time to participate.

Data Collection  We will make video recordings of all observation sessions. These recordings will be stored on a password-protected server and will be erased at the end of the project. We will also have parents complete several checklists during the study. All information collected as part of this research project will be kept confidential.

Making a Referral  If you are aware of any children who have an ASD, who are between 18 months and 6 years – 11 months of age, who engage in problem behaviors, who live in Iowa in an area that has access to high-speed internet, and whose family might be interested in the project, please have the family contact Todd Kopelman by phone or email at 319- 356-2491 or Todd-Kopelman@uiowa.edu. A copy of the Informed Consent Document, which provides additional details about the study, is available for review. Thank you for your interest in this study. Please do not hesitate to contact us with any questions or requests for more information.

 

University of Iowa – SPARK – Igniting Autism Research – Improving Lives  

If you or your child has a professional diagnosis of autism, the University of Iowa invites you to learn more about SPARK, a new online research study sponsored by the Simons Foundation Autism Research Initiative. The mission of SPARK is clear: speed up research and advance understanding of autism by creating the nation’s largest autism study. Joining SPARK is simple – register online and provide a DNA sample via a saliva collection kit in the comfort of your own home. Register in person at the University of Iowa Medical Research Center by contacting us at SPARK-study@uiowa.edu, or visiting www.SPARKforAutism.org/uiowa. Together, we can help spark a better future for all individuals and families affected by autism.

 

University of Iowa Research Study: DECISION MAKING OF YOUNG ADULTS ON THE AUTISM SPECTRUM AND THEIR CAREGIVERS – CALL FOR PARTICIPANTS

  • An inter-disciplinary team from the University of Iowa is undertaking a multi-faceted study of high-functioning young adults on the autism spectrum. Our focus is on their decision-making styles and outcomes as they face both routine everyday decisions and, because of their stage in life, life-altering decisions concerning education, employment, and personal relations.
  • In the current study we focus on comparisons between persons on the spectrum and their caregivers in terms of how persons on the spectrum perceive themselves and how others perceive them.
  • We are seeking both persons on the spectrum and their caregivers to complete an online survey for which they will be paid $20. If you reply by sending us your contact information, it merely means that you’ve given us permission to contact you later about the details of the study but without implying any commitment on your part.
  • Beyond the monetary compensation, we hope that you will see this as an opportunity to increase society’s understanding of what persons on the spectrum have to offer.
  • If you are interested and are at least 18 years old, please respond by indicating your name, your email address and whether you are on the spectrum or are a caretaker for someone on the spectrum. Please respond to the following e-mail address: TCOB-decisionmaking@uiowa.edu
  • If you are a person on the spectrum and are interested in participating, please share this notice with a caregiver. If both you and your caregiver participate, you will be asked to independently fill out separate surveys and each of you will be compensated.

 

University of Kansas

Are you or do you know a parent of a child with Autism?

We are looking for parents of child with Autism Spectrum Disorder (ASD) to participate in our interview study. The Study aims to understand the relationship between level of parenting stress on child’s communication skills. Participants will also receive $40 for your participation.

Eligibility:

  • PARENTS OF CHILDREN WITH A DIAGNOSIS OF AUTISM SPECTRUM DISORDER
  • CHILDREN MUST SPEAK/SIGN LESS THAN 30 FUNCTIONAL WORDS
  • CHILDREN MUST BETWEEN THE AGES OF 4 AND 10 YEARS
  • WILLING TO SPEND UP TO 4 HOURS OVER 2-3 CALLS
  • LIVE IN MIDWESTERN US

Benefit: This study will include no-cost parent and child assessments administered through parent interviews, including level of parenting stress and children’s communication abilities.

For more information and a clickable flier, click here. For the consent form, click here. If you are interested, please contact Suma Suswaram at suswaram_suma@ku.edu or (785) 331-8805

 

University of Notre Dame- SPARC Project

Thank you for your interest in the University of Notre Dame Supporting Parent-Adolescent Relationships and Communication (ND-SPARC) Project. Click here for a brief screening questionnaire to determine if our study would be a good fit for your family. It should take about 10 minutes for you to complete. We are going to ask you some questions about your family. You do not have to answer any questions you are not comfortable with and are free to stop at any time. For a printable flyer, click here.

 

University of Southern Mississippi

  • Parents of children and adolescents ages 7-17 are invited to participate in a research study examining parenting strategies, parental stress levels, and their child’s behavioral presentation.
  • Parents are invited to participate if they have a child with:
    • Autism Spectrum Disorder (or Asperger’s Disorder or PDD-NOS)
    • Attention-Deficit/Hyperactivity Disorder
    • No developmental, behavioral, or emotional diagnoses
    • (Please note: If the target child has any siblings who live in the household, those siblings must not have been diagnosed with or suspected to have any developmental, behavioral, or emotiona diagnoses)
  • Parents will complete questionnaires via a secure, online website.
  • This study has received approval from The University of Southern Mississippi Institutional Review Board.
  • Please contact Elizabeth Fair at elizabeth.c.fair@usm.edu for more information or if you would like to participate.Vanderbilt University- Spectrum for Life-Interconnected Surveys Project
    The Spectrum for Life-Interconnected Surveys Project invites adults on the autism spectrum (with a diagnosis and those who self-diagnose/self-identify with being on the autism spectrum) to complete surveys on a wide range of topics.  Participants will first enroll in the Spectrum for Life – Interconnected Surveys Project (S4L-IS; VUMC IRB approval number: 201086) and then will be able to choose from their preferred survey topics.

    The interconnected studies are nationwide surveys conducted entirely online.  The studies cover a variety of topics, including employment, health and wellbeing, bullying, environmental resources, sensation and perception, personality, and characteristics related to autism. Each survey topic is taken separately.  The time it takes to complete some survey topics is as short as 5 minutes while other topics can take up to an hour to complete.  Participants are able to save and return to the studies. For a printable flyer, click here.

     

    Vanderbilt University- Residential and Respite Care Services Study

    We are conducting a survey of families of adults with disabilities to explore the factors associated with different types of residential placements and respite care services for adults with disabilities.

    The survey will take less than 30 minutes to complete. The survey is anonymous and voluntary and the responses are confidential. The responses will be helpful in determining issues and supports related to residential and respite care services. We will raffle ten $25 gift cards at the close of the survey for participants who complete the survey.

    If you would like to complete the survey please follow the link: https://is.gd/residential_respite_survey

    If you have any questions or concerns pertaining to the survey, please contact Maria P. Mello, M.Ed., BCBA at maria.p.mello@vanderbilt.edu or at (615) 669-2581.

     

    Virginia Tech- Online Web-Based Autism Portal

    A group of students at Virginia Tech are working on a project for us to design an online web-based portal for autism. The portal is intended to provide a means of support and credible/valid resources that will be useful to families, individuals, teachers, providers, and anyone else seeking information about autism-related issues. The students are seeking input as they design the portal.
     
    If you are willing to provide input, please complete this survey (you may need to copy and paste into your browser): Autism Support Portal Questions
     
    The survey is completely anonymous and will not be used for research purposes. It is only to collect ideas that can help with portal development.